Post-Op Day 1

Sorry I haven't been able to update all day.  I hope you believe in "no news is good news."  Getting to a computer lately has been a true challenge.  I hate to knock on the hospital (it has many good points that we love) but it is a little slow on the wireless uptake. 

When we were waiting during surgery we were told that we would have internet connection on this floor - in the CICU and the HKU (heart and kidney unit - once she steps down to the floor).  But, that isn't exactly true.  Upon further investigation - there IS wireless.  However, there are only a limited number of people allowed on it at a time (what!?!?!?!?) and it only reaches so many feet from the nurses station.  And guess what?  Yep, you got it.  We are just outside that range. 

I mean, what gives?  How hard is it to provide wireless to more than a few people within 20 feet?  Technically, is that even still considered wireless? 

So, in order to update you (my family and loved ones) during a stressful time in my life, I have to use a computer provided by the hospital.  There are several in the library (open 8-5) and three in the family waiting room outside the CICU, PICU and HKU (that's a lot of beds, in case you're wondering).  And they offer three whopping computers - one of which isn't working.

As far as the library is concerned, that's where I've used the computer every time since Harlie's birth.  I have never had a problem getting on a computer.  Until this stay.  I couldn't get on one for hours yesterday (from either location) or this morning.  And it is a far walk to get there - so it gets pretty darn frustrating real quick.  I asked the librarian if there were less computers than there used to be.  Yes, they used to have 25 (I think).  She said that they took a survery and that the most that were being used at the same time was 9.  So, they downsized to 7 computers.  ????  She said that they are getting new ones any day now and there should be a total of 12. 

I wish they would get wireless like most other hospitals - that way I could stay with Harlie while I update, which would be wonderful.  And way less stressful.  Plus, I could upload photos.  So, I'll have to upload the photos when we get back to the Ronald McDonald House.  But, she looks good.

Anyway, enough of that...

Harlie is doing well.  At around 2pm ENT came by and removed the intubation tube from her trach stoma and put in a regular trach.  She looks normal again.  And the nurse also pulled the tube from her mouth (that went into her belly).  Overall, she looks very comfortable and is resting peacefully. 

They are putting her on CPAP now (which means she'll be doing more breathing on her own versus the machine forcing her to breathe).  Harlie definitely likes to breathe on her own and she always does better and is happier without the vent.  Plus, the positive pressure is actually bad for her circulation and heart issues.   So, we're very lucky that she doesn't need the vent for very long.

They are reducing her sedation meds so that she can start to wake up.  We'll see how that goes.  She's had a fever today, but that is totally normal post-op.  She's also starting to swell (most obvious in her hands and feet).  That is also totally normal and expected post-op.  Balancing fluid is an issue and a challenge after the Fontan.  I was told that post-op days 2 and 3 are usually the worst of it, though. 

She had another EKG this afternoon and there was some intermittent heart block (but nothing to be worried about at this time).  I think that's happened to her after every heart surgery so far.  It just takes a while for her body to adjust to the changes.  I think they decided to leave the external pacers on for now. 

So, that's pretty much it.  Not much to report on, really.  It has been a quiet day, which is great. 

As usual, thank you so much for all your thoughts and prayers!  Clearly, they were heard!  Things are going way more smoothly than I was anticipating. 

Much love,
Christy